Somali Tuberculosis Cultural Profile

Background & Methods

In recognition of the role that culture plays in shaping people's attitudes towards illness and their compliance with medical treatment, in 1999 and 2000 six focus group discussions were held among members of the Seattle Somali community. Tuberculosis, health seeking behavior, treatment, social meanings and consequences of the illness were discussed in depth. Discussions were recorded and themes with implications for clinical TB care and treatment were identified. In collaboration with local Somali community leaders, these themes were transformed into patient teaching points and subsequently woven into an audio script involving an informal discussion among Somali friends who have gathered at a community celebration that effortlessly turns to the familiar topic of TB. Finally, the tool was pilot-tested among Somali patients in the clinical setting prior to it being made available here on EthnoMed. This teaching tool Somali Tuberculosis Patient Education can also be viewed on EthnoMed.

The following profile was written after reevaluating the focus groups' transcripts and was reviewed by the Ethnomed team, Dr. Carey Jackson, director of the International Medicine Clinic at Harborview Medical Center, and Anab Abdullahi, Somali interpreter on staff at Harborview.

Note: The information provided below has been identified in an effort to promote a greater understanding of the cultural variation in how illness, disease and the body are experienced. The lived experience of tuberculosis must be seen as inherently individualistic and a reading of these topics alone should not bestow a sense of complete cultural competency. Rather, this reading should be a first step in further exploring the constantly changing meanings associated with Tuberculosis.

Diagnosis and Clinical Features

Somali informants expressed varying beliefs concerning the contraction of TB ranging from punishment for dishonest or bad deeds, a test of humanity, heredity, sorcery and witchcraft, environmental factors like overwork, distrust or loss of faith, as well as beliefs in concordance with Western biomedical understandings of TB contraction.

For many, tuberculosis is distinguished from other causes of coughing on the basis of hemoptysis and/or weight loss. A cough, either productive or nonproductive, is considered to be a chest infection or inflammation (hergab) until hemoptysis, or the weight loss characteristic of tuberculosis, occur. When fever and chills are prominent and hemoptysis is absent, tuberculosis may also be confused with malaria.

Although symptoms such as cough, weight loss and enlarged lymph nodes are consistent with the biomedical understanding of major symptoms of active TB, the associated cause, disease process, and needed treatment may be understood differently. Some Somali informants identified various phases of coughing, the second of which might be referred to as waren. This phase is characterized by sharp pains in the chest and difficulty breathing, symptoms potentially signaling a sickness more serious than just a cold or cough. The different sounds of a cough are also identified as markers of various and changing phases, for which traditional treatment might also change.

Language

The Somali word for cough is qufac. Most Somalis use "TB" or tibisho (derived phonetically from Italian) when talking about tuberculosis. Tibisho is used more commonly in southern Somalia. In parts of Somalia north of Mogadishu, the word qaaxo (pronounced "kah-ho") is sometimes used for tuberculosis. Qaaxo and urug are historical Somali words for the entity of tuberculosis with cough and hemoptysis. Both words bring to mind a powerful dark image of an isolated, ill person who is close to death. Qaaxo may even be used as a curse, however informants note that falling victim to qaaxo is different than being possessed by a jinni, an evil spirit.

Many Somali informants identified a community member known as a Ma'alin, or an elder who can be a teacher, herbalist or practitioner consulted for TB treatment. Such a “special elder” is believed to know which trees, roots and herbs from the forest can be used to treat an illness or disease. For example, wanzilo is the name of a tree sometimes used in preparing one traditional remedy. The bitter leaves of this tree are collected, boiled and put in a bucket. The afflicted person will then inhale the steam slowly let out by means of a cloth.

Haba sodah is a black seed that is mashed and used with a hot oil to massage the body of someone with TB. The aim of this process is to induce sweating, which is believed to release heat. The seed is also prepared as a tea, which the person afflicted would drink. Haba sodah is available at certain grocery stores here in the U.S. (see also Traditional Treatment section below)

One Somali term used by informants to describe the isolation a women infected with TB undergoes is mahabia. The word used to refer to the hut (made of branches and large leaves) where a person might be isolated is mudul.

Traditional Treatment

“All the medicine, any type of medicine, no matter what the provider is prescribing to us, we have to start with the name of Allah, and we are saying that, God, if this one will be a treatment for me, make it or not, the judgment is yours. At the same time we are asking God, make me the good treatment for the disease.”

There exists a vast array of treatments used to care for TB, though, if possible, treatment tends to combine both traditional remedies, prayer, elderly practitioners (Ma'alin), as well as Western, allopathic medicine. The order in which these are sought, particularly as a result of the strong social stigma attached to the disease, tends to favor traditional treatments that can be used privately. The combination of local remedies can vary based on locality (nomadism, urban or rural), relations to environmental surroundings and animals (sea animals, birds or foul, domesticated, etc), folklore, and the varying beliefs of community elders who are considered extremely knowledgeable regarding herbs and other remedies.

Reading specific sections of the Koran is regarded as one of the most widely used treatments for TB. Because God is often considered the sole cause of TB, which extends to varying beliefs regarding tests of faith or punishments, the Koran is often read after ablutions (the ritual act of washing) are performed. A Ma'alin may be called upon to read, or the entire family may participate, as TB is considered a sickness that affects the entire family, particularly through social stigma. Some informants expressed that reading any part of the Koran is “medicine,” as it can be considered the sole source of family, peace, sickness and health.

One common folk remedy for coughing used by Somali children and adults consists of a mixture of raw eggs, butter (similar to Indian ghee) and honey. Adults may make this for themselves early in the course of an upper respiratory infection. Young children with a cough may sometimes undergo a uvulectomy (a procedure whereby a piece of the uvula - the little bit of flesh that hangs down from the rear portion of the soft palate- is cut). Drinking camel's milk is also believed to be beneficial to someone who is sick, as it induces urination and bowel movements, which clear out the stomach of maladies. Some rural Somalis will be familiar with herbal treatments that use tiire or khabayere. These are tree roots which may be cooked with meat for special diets or boiled for ritual bathing, drinking and cloth compress.

When an illness is identified as tuberculosis, the family may prepare an especially nourishing diet (baan) used to hasten the recovery from any serious illness or from pregnancy. This diet may include the consumption (at times entire) of a ritually sacrificed animal (camel, sea turtle, condor, chicken still laying eggs, hyena, sheep and fish were all mentioned based on varying locations and beliefs), and may consist of drinking rendered animal fat and eating liver, milk (rarely consumed by adults otherwise), eggs, and a mixture of dried meat and butter. A person who uses the stimulant khat (also called miraa) will stop chewing it because its respiratory stimulation properties, though beneficial for asthma and malaria, are thought to be harmful for tuberculosis. A traditional healer may also be sought to administer small, round burns with the end of a hot stick.

Some Somalis discussed a lack of treatment for TB as a result of a fatalistic belief in the power of God. To quote one informant:

“The bottom line is God created all the human beings and He knows the day that He created them, He knows the day that he was born until his death, so all the passages that he's going to pass, that person, God, He designed it. So there is no way that it can be changed by doctors or by spiritual leaders or by anybody.”(see also section on Language above)

Contagion, Stigma and Isolation

“As you know, I still feel the worst disease is the TB. The person who is infected with the disease, I won't, I will never be close to him, I'm afraid of his air, afraid that his airwave will reach me, or the glass that he drinks, I would have to avoid to even touch, not just sharing, but even touching his glass.”

Beliefs about what causes TB may conflict with the biomedical understanding of the cause of this disease. Although Somali beliefs about the cause and mode of transmission of TB can include an infectious person coughing germs into the air, which results in others becoming infected after breathing in these germs (this mirrors the biomedical understanding), focus group data clearly indicates that most Somalis don't inherently embrace this understanding, and that even those that do may simultaneously believe that there are other causes of this disease. The most prominent belief expressed was that the contraction of TB is a result of “God's will.” In other words, many beliefs exist, and while some are in contrast to biomedicine, they are not necessarily mutually exclusive. For example, it is common for a Somali to believe that TB is a hereditary disease, passed from generation to generation (some believe for as many as six generations) within a family while also believing that TB is evidence of a curse inflicted as punishment by God for dishonest or unethical action. This same person may further acknowledge that TB can be passed through the air from a sick person coughing. Additionally, there are at times suspicions that an infected person may intentionally contaminate the food or water source of others to be vindictive, a mistrust that may stem from fear and misunderstanding related to TB contagion.

Because treatment for tuberculosis has only become known in Somalia within the last few decades, and even now is too expensive for many families, the diagnosis of tuberculosis has traditionally meant a lifetime of illness and stigma. Those with tuberculosis fear that others will shun them. Nomadic families might move their huts away from a family that has tuberculosis. Tuberculosis sufferers are often confined to their own huts and given their own utensils and drinking cup instead of being allowed to eat with their hands from the same plate of food or drink from the same cup as family and friends, as is customary.

“Once we are sure that the person has TB, we'll worry because we know we are going to isolate him. We know that we have to make a decision. We will talk to make sure that he has the disease, and then his cup, his plate and everything has to be apart, even a room if it's available so that he can sleep alone…There is no other way. It's hard, he cannot stay with us, they have to take him away.”

Most informants explained that a person suffering from TB will be treated very “differently,” and, in an extreme case, a few Somalis expressed fear of reprisal from imposing isolation on a friend or family member who has contracted the disease.

“…for example, if they have TB, they won't tell you that they have TB…they want that you also have TB…because they know that they will be isolated and they become very vindictive. They want everyone to have it…He will trick you… when the people usually drink from a pot of water and everyone has a glass, they all drink and throw the remaining out. But the person with TB will drink, spit inside, and throw the remaining back in the pot…there's suspicion.”

The social isolation can be so profound that the stigma of tuberculosis in Somali culture can be as severe as that of AIDS in Western culture. Many of the Somalis interviewed referred to TB as “the worst disease in the world.” Persons with symptoms of tuberculosis may avoid seeking health care, or once the diagnosis is known, deny their illness to themselves or others. Children who are known or suspected to have TB will often not be allowed to go to school, which is increasingly the vehicle through which health education about diseases like TB is taught.

Another implication of this stigma for immigrants to the U.S. concerns contact investigations: a family sharing a house or an apartment with other families may be reluctant to share information with public health authorities to avoid disclosure of their tuberculosis infection status to their housemates and the community.

Skin Testing (PPD), BCG & Latent TB Infection (LTBI)

“Some believe that if it makes a big scar…it means that the medication went through really well.”

PPD

Tuberculosis skin testing can be a confusing and sensitive topic. Many Somali immigrants had their first experience with skin testing in refugee camps. The repetition of skin testing in the U.S., and the sometimes-conflicting results (e.g. a negative test in the camp and a positive test in the U.S.) can raise suspicions of discrimination and hinder trust for future PPD attempts. Some believe the skin test is an immunization, while others understand the injection to be a source of infection. It is very rare for a Somali to have had experience with PPD skin testing (evaluation for LTBI) prior to immigrating to the USA.

BCG

There also exists a belief that all Somalis receive BCG (the vaccine given to protect against TB) as a child back home, and that BCG vaccination causes the PPD test to turn positive. It is commonly given to babies and young children living in areas of the world where TB is fairly common, including Somalia and Kenya. It is a common belief among Somalis that the positive PPD just indicates that their BCG vaccination was effective and they are protected against this disease.

LTBI

Specifically related to understanding a diagnosis of TB infection in the absence of symptoms, Somalis may have no prior reference point for understanding this diagnosis. One aspect of the health screening completed prior to coming to the USA as a condition for entry (most often performed in Nairobi, Kenya) is a chest x-ray (not performed for those under age 12). The goal of this pre-asylum chest x-ray is to identify people with infectious TB; pre-asylum screening does not involve testing for latent TB infection. Some Somalis expressed the belief that a normal chest x-ray equals a wholly negative screening for TB. When a Somali is told that their x-ray is normal, they are overwhelmingly relieved as they understand this to indicate that they do not have this horribly stigmatizing disease known as TB; therefore, some informants expressed a reluctance to accept being infected with TB without having or personally perceiving symptoms associated with the illness understood to be TB. From a Somali's standpoint, if they are feeling healthy and do not have symptoms that they associate with TB, they will be very reluctant to link a positive PPD with the infection/disease called TB.

Considering the Lived Experience of TB: Recommendations for Providers

It is important to recognize that illness experience will differ based on an individual, regardless and inclusive of common cultural beliefs surrounding an infliction. Illnesses like TB may be seen as metaphors, taking in and exuding the realities of the social conditions under which an individual may have known symptoms at home. This extends to the realities of poverty, demoralization, the fear and misunderstanding of disease, as well as the guilt from a potentially “self-inflicted” illness like TB. An effective response to TB will take into account these social meanings as viable elements of an illness experience.

Informants often related some sort of illness narrative during the interview, either of themselves, someone they know with TB, or a story incorporating a local myth. This signals not only the strongly individual meanings associated with contracting TB, but also demonstrates how social values, beliefs and connections often mediate how the body is conceived and treated. Somalis living in the United States may struggle with self-definition based on a merging of the life they knew back in Somalia with the one they live here.

“What we Somalis, when we are patients, what we like is when we go to the doctor or any other clinic, what we want is that they are going to make a full check-up. I mean drawing blood, stools, urine, and x-rays, anything when we are new. We want to do all these check-ups. Once that it's clear that there's no disease, we'll be happy. If the doctor doesn't send us to make all the check-ups and decides only to tell us to take this medication, and that medication, it's a little bit, you know, we don't trust that.”

Some recommendations for providers:

Legitimate the illness experience and try to increase the amount of time spent with the patient – often the seriousness with which a patient comes to consider TB is dependent upon the perceived seriousness of the provider.

Treat the diagnosis of tuberculosis with the same sensitivity and confidentiality you would reserve for sexually transmitted diseases and HIV; informants have cited TB as “the worst disease in the world.”

Educate your patient about the curable nature of tuberculosis and emphasize the good health that will result from treating the disease, as well as the alleviation of personal and familial stigma that will result from such an improvement in health.

In regards to prescribing and taking medicine: some Somalis expressed a distrust of Western treatment and doctors because of changes in medications and dosages. In the focus group, these changes were often considered “experimentations,” a trial in which the desired outcome was a result for a medical test, not the alleviation of sickness or suffering. A discussion of the reasons behind any such potential dosage or prescription change is recommended in advance.

Similarly, the topic of potential side effects (pain in the liver, jaundice, nausea, etc.) from taking medicines should be discussed in advance. This is important particularly for patients prescribed medicine for LTBI, as many informants expressed confusion over not feeling sick before consulting a provider and then experiencing side effects after.

Because LTBI is often a source of confusion for patients, a “start from scratch” approach is recommended. The provider and patient should discuss the differences between TB and LTBI where the importance and seriousness of both are communicated, and the following of a prescribed treatment are stressed.

Take time to discuss the social ramifications of the disease. If the patient is not infectious, reassure him or her that full social participation should continue as before the diagnosis. Family members should also be reassured that the patient can participate in meals and family activities without danger of infecting others.

Do, however, consider the social suffering and lived experience of TB as equally discomforting and disruptive as the routine taking of medication or scheduled doctor visits.

Research Summary, References and Further Reading

This brief research summary highlights a few qualitative and quantitative studies that sought to identify prevalence of TB, knowledge, attitudes and health seeking behaviors among Somali refugees and immigrant and providers, as well as incidence of decline and frequency of contagion relating to pre-and post-immigration. Using PubMed, article abstracts and other online research databases, the studies mentioned and cited below cover a range of geographical areas from Africa to the U.S. to Europe.

A 2002 CDC study of African immigrants in Seattle's King County found that of all the reported cases (n=486) of TB, 79 (16%) were among African immigrants and 67 (85%) of those were among Somali, Eritrea or Ethiopian immigrants. Kempainen et al. found that in 1997, incidence of tuberculosis in Minnesota's Somali population was estimated at 170 cases per 100,000 population compared with a national incidence of 20.5 per 100,000 among African Americans and 2.5 per 100,000 among whites. Ninety percent (90%) of Somali patients were < 40 years of age; 63% were diagnosed within 1 year of immigration, and > 90% had positive results with a purified protein derivative skin test.

A larger-scale study conducted by Lillebaek et al. (2002) addresses the assumption of a prompt decline in the incidence of TB in Somali immigrants during their first few years of residence in a country with low overall incidence. Their study, conducted in Denmark, finds that assumption to be less accurate, showing that the annual incidence of TB in Somali immigrants (n=619) declined only gradually during the first 7 years of residence, from an initial 2,000 per 100,000 to 700 per 100,000. Recommendations for this study match those of EthnoMed and highlight a need for control and prevention strategies that are tailored to the specific foreign-born populations at risk and focus on diminishing the incidence and prevalence of latent infection to reduce the pool of TB infection from which future cases of TB will emanate.

Kempainen's study found the 1997 incidence of tuberculosis in Minnesota's Somali population was estimated at 170 cases per 100,000 population compared with a national incidence of 20.5 per 100,000 among African Americans and 2.5 per 100,000 among whites. Ninety percent of Somali patients were < 40 years of age; 63% were diagnosed within 1 year of immigration, and > 90% had positive results with the purified protein derivative skin test.

A 2004 study in inner-city London conducted by Shetty et al. was aimed at specifically exploring the knowledge, attitude and practices (KAP) of Somali immigrants with TB (n=23), their family members (n=25) and the general Somali immigrant population (n=27). The results revealed that most were aware of the infectious nature of TB, but uncertain of other risk factors, and that belief in biomedicine for TB was clear with men having a significantly higher belief score than women. A closer look at the study, however, reveals that all those interviewed were educated, multilingual, and already aware of important health issues. This study, as well as those cited above and referenced below, point to a growing need to address the worries and misconceptions regarding basic TB contagion and infection of recent immigrants into the country.

The following list contains online and medicinal journals, newspaper articles, academic papers and practical tool sheets written in Somali for the use of all providers.